District Decides To Provide Life-Sustaining Care to All

Horrified to learn that school personnel might be expected to carry
out do-not-resuscitate orders for some of the "medically fragile''
children they serve, the Bangor, Me., school committee last week
approved a policy requiring school staff members to provide
life-sustaining, emergency care to any student who needs it, regardless
of parental orders to the contrary.

The new policy--and a similar one approved weeks earlier in
neighboring East Holden--are thought to be among the first of their
kind nationally. But experts say school districts nationwide may face
similarly complex medical and legal questions as growing numbers of
children with serious medical problems come to school.

Under federal special-education law, children with disabilities or
serious medical problems are entitled to public schooling.

The Southern Penobscot Regional Program for Exceptional Children,
which provides centralized special-education services for schools in
Bangor, East Holden, and 27 other communities in the region, has served
medically fragile children since 1979. Those children are typically
taught in separate classrooms in regular schools where employees are
trained to provide some of the special services they need, such as
catheterization or suctioning of tracheotomy tubes.

However, Bangor school officials said they were unaware some
children had do-not-resuscitate orders until early fall. The issue
arose when the director of the Elizabeth Levinson Center, a local
state-run residential facility where some of the children live,
informed them they would be expected to comply with an order in the
case of one student.

School officials then discovered that authorized orders existed for
three other students who have deteriorating medical conditions or
painful terminal illnesses. One student has since died in a
hospice.

"We were uncomfortable,'' said Murray Shulman, the director of pupil
services for the Bangor schools. "We did not feel it was appropriate
that a school facility would be required to follow those kinds of
orders.''

'Reasonable Steps'

Under the policy, approved by the school committee on Dec. 7,
appropriately trained staff members must summon emergency help and take
"all reasonable steps'' to provide life-sustaining care when a
student's life is at risk--even if that means overriding
do-not-resuscitate orders.

In practice, however, the do-not-resuscitate orders for the students
in question applied only to cardiopulmonary resuscitation, said Joanna
Dotts, the pediatrician for two of the students. That technique, which
involves pounding on a patient's chest and invasive procedures, is
increasingly viewed as inhumane for patients with painful terminal
illnesses.

Neither the parents nor officials at the Elizabeth Levinson Center
opposed the new policy. But Kathi Murray, the center's director, said
that some of the parents were frustrated by the school committee's
action.

"They've spent many years making these decisions and they're not
easy to make,'' said Ms. Murray.

But, she added, "We're just trying to say to schools, 'Fine, do what
you need to do.' ''

After seeking legal advice, Dr. Dotts said, center officials also
concluded that the parental orders applied only to medical
personnel.

Bangor school officials said a policy was needed, however, to
provide some direction to staff members who work with the children.

Moreover, they said, they feared the school system could become
liable for a "wrongful death'' lawsuit if a student was left unaided to
die on school property.

Concerns were also raised about the impact of such a death on staff
and students.

"You can imagine the effect on a child if someone is dying and
nobody helps,'' said Martha Newman, the director of the school
committee.

A Coming Concern

Nationwide, experts said, they know of no other school districts
confronting the question of do-not-resuscitate orders for medically
fragile children. However, they predicted the issue could become more
prominent as medical advances enable growing numbers of such children
to live longer and to attend school.

According to a report by the Congressional Office of Technology
Assessment, 17,000 children nationwide in 1987 depended on medical
technology to survive. The number of children who fall into the broader
category of medically fragile, which also includes children with AIDS,
for example, is thought to be greater.

"In the eyes of the law, schools are special places and education is
their primary mission,'' said Ellen Moskowitz, a lawer at The Hastings
Center, a health-policy think tank in Briarcliff Manor, N.Y.

"Nonetheless, at the very least, it seems you would want schools to
think very carefully whether there was a way to accommodate the wishes
of these very sick children,'' she said.

The issue becomes more complex, she said, concerning medical
personnel in schools. She said school nurses, for example, might be
bound by a do-not-resuscitate order.

In Bangor, school officials ended a contract with a nursing agency
because its officials said their employees would honor parental orders.
The agency had provided a nurse to accompany a child on the bus ride to
and from school.

District officials also said the four school nurses on staff must
comply with the new district policy.

However, emergency-medical personnel who might be called to the
scene must follow parents' wishes, Dr. Dotts said.

Ground Rules for Posting
We encourage lively debate, but please be respectful of others. Profanity and personal attacks are prohibited. By commenting, you are agreeing to abide by our user agreement.
All comments are public.